Health minister tries to block bill backing controversial MS therapy

Don Butler, Postmedia News02.27.2012

Health Minister Leona Aglukkaq has sparked anger by aggressively opposing a private member's bill that would accelerate clinical trials of so-called liberation therapy for people with multiple sclerosis.

Typical user is 47 and lives on B.C.'s Sunshine Coast, according to recently collected data.

OTTAWA — Health Minister Leona Aglukkaq has sparked anger by aggressively opposing a private member's bill that would accelerate clinical trials of so-called liberation therapy for people with multiple sclerosis.

The private member's bill, sponsored by Liberal MP Kirsty Duncan, is scheduled to come to a vote on second reading Wednesday in the House of Commons.

It calls on Aglukkaq to convene a conference of provincial and territorial health ministers with the aim of establishing a national strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI), a vein blockage that has been linked to MS.

In 2009, Italian vascular surgeon Paolo Zamboni devised a treatment that uses balloon angioplasty to widen blocked veins in the neck, a procedure that has relieved the symptoms of some MS patients. About 30,000 MS patients in 60 countries have since had the treatment, but it remains unapproved in Canada.

Though private member's bills rarely become law, on Feb. 17 Aglukkaq took the unusual step of writing a letter to MPs opposing Duncan's bill, a sign it might have been winning support from some government backbenchers.

Duncan said Tuesday about 10 Conservative MPs have told her they plan to vote for the bill, which already has the backing of the NDP and the Green party. "I think that's why there has been this campaign," she said.

In her letter, Aglukkaq tries to debunk arguments made by supporters of Duncan's bill. "Numerous international scientific committees and experts across the globe have stressed caution in this issue, as there is yet to be unequivocal scientific evidence that the Zamboni procedure is safe and effective," she writes.

Aglukkaq also rejects assertions that venous angioplasty is a routine procedure, saying the only commonly practised balloon angioplasty done on veins is for patients undergoing dialysis treatment.

By legislating clinical trials, the minister warns, Duncan's bill would undermine "the independence of our scientific process and the safety of our fellow Canadians. However difficult the decision is, as parliamentarians we have an ethical obligation to put patients' safety first."

Aglukkaq's letter began circulating on social media to advocates for Zamboni's procedure this week. Many are responding angrily.

"I am just so pissed," exclaimed Christopher Alkenbrack, a Nova Scotia MS patient who runs a CCSVI Facebook page. Aglukkaq's letter, he said, "was like a knife through the heart. It's full of misinformation."

Alkenbrack underwent Zamboni's procedure in Poland in 2010. Formerly confined to a wheelchair, he can now walk with the aid of a cane.

Linda Hume-Sastre of Ottawa, president of CCSVI Ontario, said MS patients she's in contact with are "wondering why the minister would feel compelled to speak against a private member's bill, when it's very clear that voting on a private member's bill is a free vote."

Duncan said Aglukkaq's efforts to derail her bill accelerated following the Feb. 9 airing of MS Wars, a CBC documentary about the controversy over Zamboni's procedure.

On Feb. 13, Aglukkaq arranged a briefing to update MPs on MS research — the day before Duncan brought in two American scientists to address the issue at a breakfast for MPs.

On Feb. 16, in a move designed to pre-empt Duncan's bill, Conservative MP Leon Benoit introduced a motion calling on the government to provide information about Zamboni's treatment to MS sufferers. That motion will come to a vote Wednesday, hours before the vote on Duncan's bill.

Aglukkaq then sent out her letter on Feb. 17, and emailed MPs again this week to remind them about it.

Duncan — who has attended seven international CCSVI conferences and spent nearly 100 hours reviewing MRIs and observing Zamboni's procedure — waited until Tuesday to post a rebuttal on her website.

In it, she listed 17 studies that have found a positive link between CCSVI and MS compared to 10 that have not. She also pointed to three major studies into the safety of liberation therapy treatment that found few major complications and others that indicate that the treatment relieves symptoms for many MS patients.

As well, Duncan said Aglukkaq's claim that venous angioplasty is not routinely performed is "patently false." The procedure, she said, is use to treat Budd-Chiari disease in the liver and May-Thurner syndrome, caused when the left iliac vein is compressed by the right iliac artery.

If passed, Duncan's private member's bill would oblige Aglukkaq to begin the process of developing a national strategy for CCSVI within a month, and promptly begin clinical trials designed to place Canada at the forefront of international CCSVI research.

Though the government agreed last year to create a registry to collect data on MS patients who have CCSVI, data collection won't being until September 2012. The government also agreed last year to fund clinical trials, but those won't start until later this year either.

Meanwhile, Duncan said, 400 people die every years in Canada of MS, which afflicts an estimated 75,000 people, and patients worsen by one disability score each year on average. "One month can mean the difference between working or not working, walking or not walking," she said.

Comments

We encourage all readers to share their views on our articles and blog posts. We are committed to maintaining a lively but civil forum for discussion, so we ask you to avoid personal attacks, and please keep your comments relevant and respectful. If you encounter a comment that is abusive, click the "X" in the upper right corner of the comment box to report spam or abuse. We are using Facebook commenting. Visit our FAQ page for more information.